Surviving EDS - Please Help Our Friend Leenie

Can you imagine life where your organs, skin, bones and joints all dislocate, break and deteriorate on their own accord? Where you are in constant pain, waking up with your skin swollen, your muscles in agony and your need to pop your own ribs or joints back into place painfully each morning just because they dislocated in your sleep?

That's the reality of our friend Leenie's life. She has a severe case of Elhers Danlos Syndrome  Type 3 and has suffered with it her whole life. Because of her health, she has been unable to work consistently in recent years, as her health has been deteriorating and there are few options for her at the moment. 

Seven years ago she had the most severe episode of her EDS. Leenie woke one morning, turned her head, and her neck dislocated breaking an inch and a half off her spine. Her C1 and C2 had completely separated, internal decapitation as Leenie describes it. She was in the hospital for two months after that, unable to move, with her head bolted back onto her body with a halo which she had for 6 months. It was miraculous to have survived such an episode!  Leenie wore a neck brace for all the years that have followed that episode, and in the past few months, as been working hard to regain her strength in her neck and move away from wearing her neck brace as much as possible. 



Despite Leenie’s challenges, her attitude of generosity and positivity has never wavered. Even in her darkest times, Leenie has always been a shining light for her friends and family. She works hard and cares for everyone around her. Leenie is the first to offer an ear, a hand, or the shirt off her back to someone else in need. We cannot think of anyone more deserving than Leenie to receive the support of her friends and the community around her.

This GoFundMe for Leenie can dramatically change her life by giving her a safe space to call home, a space where she can finally focus on things she can do for her health to make her life more comfortable and manageable. 

Before her accident, Leenie worked with adults with high behavioural special needs. She is fluent in sign language and has the biggest heart of anyone you'd ever meet. She loves to write and play music.  She's a natural artist and musician, creating music and singing because she sees that it brings joy to others. Over the last few years she’s made ends meet in creative ways; by offering house concerts and writing custom songs. Here is a link to one of her newest songs, Home ... 

This August (2020), Leenie suffered multiple seizures in one week (she also has epilepsy) and was in the emergency due to blood clots in her lungs and legs, stemmed by severe stress. She hasn't been able to work, and she doesn't have any family who can take care of her. Due to her disabilities and her lack of financial and family support, she doesn't have a home. She moves around frequently, which is extremely stressful and hard on any person, especially a person with severe EDS. 

As her friends, we can't sit and watch her suffer anymore. She needs a forever home, that's hers, where she has her own space, privacy, and can hang up pictures of the people and places and memories and sayings that make her most happy. A safe place where she can be inspired, heal, write music, and continue to make a positive difference in the lives of those around her.  

With her medical conditions, she needs to be close to good doctors and her friends who can take care of her, and where her life depends on being close to amenities and basic needs of someone with her type of EDS.  Here is a link that explains more about the syndrome, and the usual life expectancy of someone with EDS. She needs much medical support and care, which can be very expensive as well. 

It's time the community around us showed her that we care and will take care of her, the way that she has taken care of us and everyone around her.  Every person deserves a place to lay their head at night. Lets help to get Leenie hers!

Here's what we are raising money for: 

* A mobile or 1-2 bedroom home in Campbell River BC , her hometown.
* Something close to the water where she can walk or see it from where she lives. Knowing it's hard for her to get around, and knowing this is where she will want to stay long term, is really important.  
* She doesn't need anything fancy, just something that is hers that she can stay in, is safe and clean, and in a good community. 

We have found several 1-2 bedroom mobile homes in the area for $80K - $100K. If we can pay this off for her completely through this GoFundMe Campaign, we will. With your generosity and support, we can do that.  If we raise more than the needed amount, the difference will go to help pay her medical bills, transportation and food, helping to cover some of her most basic needs. 

Leenie is a wonderful, beautiful happy soul, who was dealt too many unfair cards in this world. We desperately want to find her a home that can be hers. We love her to pieces, and we ask for your help to help her find a home that she can live, heal and find peace in. Please consider helping us fund this project for Leenie, where it will make a life changing difference to her.  We are looking to raise the whole $80K by end of October, as we'd like to help her find and buy her home before the winter.  

This was the video message  we sent Leenie to ask her her permission to post this. If you can help, please do. It would mean the world. Thank you in advance for your generosity and support. 

Sincerely, 

Leenie's friends; Sarah, Iain, Lish & Jem